Caregivers

MDA Summer Camp Primes Kids for Independence

When Matthew and Jacob Rovenstine first went to MDA Summer Camp in Arizona in 2018, the brothers were 10 and 8, respectively. They live with collagen VI muscular dystrophy, a type of congenital muscular dystrophy, and at the time, their mom Becky feared that her shy boys might have trouble being away from home for the first time.

Positive Relationships

Trust. Honesty. Mutual respect. Affection. The key elements of a healthy romantic relationship are the same for all couples. When one or both partners have a disability, it can affect how they each approach daily tasks, but it doesn't change the need for constant give-and-take. For adults living with neuromuscular disease, building and nurturing positive intimate relationships may even be especially important, because there are unique dynamics due to physical limitations or the progressive nature of the disease. Fortunately, couples can rely on tried-and-true strategies for forming healthy relationships.

Working Together

Anyone who lives with a neuromuscular disease that affects mobility knows that it often takes a village of caregivers to get through a week, let alone a day. For many people, personal care attendants (PCAs) provide a large part of that caregiving. PCAs are professionals who provide home care to people with disabilities who need assistance with daily living activities. This can range from helping them get ready for the day to helping them take medication to performing chores and errands.

Claiming My Courage

There are few specific dates that stick in my memory. Sept. 21, 2016, is one of them. On that day, a phone call changed my family's lives forever. After two long years of visits with specialists and countless tests, there was finally a diagnosis for my 4-year-old son: centronuclear myopathy. In addition, his diagnosis was my diagnosis; he had inherited the mutation from me.

Parent Pressure

Since her son Jackson's diagnosis at 3 months old, Marcie Epstein has always maintained a grounded perspective on his neuromuscular disease. Jackson, now 12, first showed signs of central core disease (CCD) at 5 weeks. "This is how Jackson was born," Marcie says. "This is his life."

Make Your Wishes Known

The saying “not making a choice is making a choice” is especially true when it comes to making future plans for yourself or your child with a neuromuscular disease. If you don’t document your wishes for unforeseen circumstances or health emergencies, choices that are important to you might be made by others.

Coping Through a Crisis

(Editor’s note: In the print edition of Quest Issue 1, 2020, Sarah Clark-Stoney, MSW, LSW, was misquoted. Her quotes have been clarified here, and updated in the full, downloadable PDF version of Issue 1, 2020.) Fifteen years ago, my family lived through Hurricane Katrina in Louisiana. At the time, our son was a freshman in high school. Falling pine trees and rain destroyed half of our home. Rebuilding took seven months, and we lived in the chaos during the process.

The Independent Mindset

After Sandra Young was diagnosed with late-onset Pompe disease at age 52, she thought her life would change and she would no longer be able to do the things she enjoyed.“While my friends and family were living their lives, I was sitting on the sidelines missing out,” Young says. “It took me a year to realize I am the same person as before. I hit a stumble in the road, and it shouldn’t stop me from doing the things I want to do. I woke up and thought, ‘Girl, you can still do it, you just have to do it differently.’”

Opening Doors

Three mornings a week, Karen Toenniss, 50, grabs the car keys and dashes off to her part-time position as coordinator for the MDA ALS Care Center at Houston Methodist Hospital. Nestled in her heart, she carries her husband’s memory. “Every time I save someone even a little bit of frustration as they deal with ALS, it feels like Mike is with me,” she says.

Caregiving: Choosing with Care

Amid the wave of anxiety and emotion that can accompany living with a neuromuscular disease, Bill and Sharon Sumner saw a few things clearly the day they learned of Sharon’s ALS diagnosis. “I knew we would keep her at home, and I knew I would be the one to take care of her,” Bill says. The Sumners were in a prime position to make such choices. Having sold his successful manufacturing business, Bill had the time to devote to his wife and the money to hire personal care attendants (PCAs) as her condition progressed. But for many families, when a diagnosis is made or a disease progresses to the point where daily care is needed, the decision isn’t as clear-cut. Financial means, work schedules, family dynamics and the extent of a support system are among the many factors that go into planning in-home care.

MDA Resource Center: We’re Here For You

Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA programs are only available in the U.S.

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